Bertie was diagnosed with Ullrich’s Congenital Muscular Dystrophy (UCMD), a very rare condition, at a young age. Unfortunately, there is no medicine to fix UCMD as it is a progressive condition with no cure, instead Bertie and his family worry about managing his symptoms to prevent scoliosis of his spine. Bertie is now looked after by neuromuscular, cardiology, community physiotherapy and occupational therapy teams to ensure he can live happily both at school and home.
Despite his condition, Bertie is a happy boy. He loves horseback riding, singing, playing the drums, video games and playing with his siblings.
Due to Bertie’s condition, his family has had to make a lot of adjustments to care for Bertie’s needs. But every once in awhile they need a break from their everyday worries so that they can focus on just having fun as a family.
This is where Starlight steps in.
Earlier this year, Bertie and his sister took part in our At-Home Pottery Activity in partnership with Pot Heads Pottery. We sent them craft boxes filled with all the necessary materials as well as a video instruction on how to make their monster face pottery.
Play and laughter are so important for wellbeing and learning, but also for connecting with others and getting an idea of who we are. It was so great to see Bertie working with his sister and having such a laugh making their pottery pots with funny monster faces.
Bertie and his family also joined Starlight for our Break to Alton Towers. The trip to Alton Towers arrived just at the right time for Bertie and his family who needed help rebuilding their confidence in getting out there after the pandemic and lockdowns.
With Starlight’s help, they were able to go on a trip in a safe group and meet other people. Bertie and siblings had a ton of fun exploring the park and discovering their shared love of rollercoasters.
Starlight has a way of doing things that is always so jolly and avoids all that pathos that can follow when you have a sick child. The charity literally sprinkles joy into our little world, and it makes it so much easier for Bertie and us to manage the ongoing hurdles and frustrations.
Our Virtual Parties and At Home resources started in response to the pandemic, but they’ve been such a success that they’re now an integral part of our service offering. From virtual magic shows to arts and crafts, we’re able to bring the joy of our Starlight Escapes, Days, and Breaks into more homes like Bertie’s.
Use the link below to learn more about our Events and Experiences team and find out how to apply.